Saturday, 27 March 2010

In this day of internet access many of us seek our own information about our health.For this post I decided to put into Google search engines What to do about a tick bite? Up came 555000 links and I was very pleased to see that Lyme Disease Action was the second link on the list.http://www.lymediseaseaction.org.uk/ticks.htm

It is directly thanks to Lyme Disease Action in their efforts to raise awareness that I eventually have my health back after an illness of 6 1/2 years. I was diagnosed with many things

Those aware of the dangers of contracting Lyme Disease by the bite of a tick will do well to read information on line before discussing with their doctors as sadly because of the politics and controversy over this illness doctors are not well informed and can often miss early opportunities to treat this infection.

One lady I spoke with local to me in Guildford said her GP was so excited when she presented with a tick attached and regretted not having her camera to take a picture. However she failed to treat with antibiotics and the patient still continues with chronic ill health, which may or may not be related to the bite.

Another lady who I met with,told me that when she presented at the surgery the GP did not know what to do and called a colleague, between them they managed to remove the tick intact but lost it on the floor, where it was left to seek out the rest of it's blood feed! This poor lady has serious health problems including scans of her brain showing abnormalities which have not been attributed to any illness but which are thought to be connected with her Lyme diagnosis and on treatment her health is improving.

Another lady attended the hospital for a tick to be removed and the first time the doctor squeezed it between his fingers to pull it off!!! The next time she attended she was more informed and insisted the tick was removed with the correct tool. As it happened to be an Army hospital another doctor was called who was an Army doctor and therefore, as a tick remover was standard kit in the army, he was able to remove correctly.

A little boy was in the Bolton paper last year, he had waited with his mother at A & E and the nurse attending did not know what to do about removing the attached tick, so the mother took her son to the vets who duly removed the tick.

These are just a sample of stories I have heard, but do illustrate the serious lack of knowledge about tick removal amongst doctors. Not their fault but a fault of the training they are given and the lack of awareness about Lyme Disease and tick bites. Sadly when My MP Anne Milton asked the Health Secretary what they intended doing about raising awareness the reply was that HPA had updated their website!! Not much help to those of us who are not aware of being able to get tickborne illness in the UK.

In my personal story it took 5 doctors and 3 rheumatologists 4 years to diagnose me although I had attended at the surgery with tick bites, bulls eye rashes and summer flu' followed by migrating arthralgias.

How many people with symptoms such as mine Fibromyalgia, Arthritis, Muscle weakness, ME/CFS, Polymyalgia Rheumatica could infact be suffering with Lyme Disease?

What the Brorsons’ work shows is that, unlike other antibiotics, Tygecycline administered at the correct dosage and timing destroys the bacterium even when it has protected itself in this quiescent stage. Other antibiotics, if they do anything at all, simply cause B. burgdorferi to enter its RB propagule state and wait out the treatment. “Tigecycline is, so far, the only known antibiotic that destroys the Lyme disease spirochete in both the growing and the quiescent RB stages of its life history” Margulis notes.

If you enter Brorson in the search in my right hand column you will find I have posted before about their research but I thought these latest articles very interesting.

For an infection that IDSA says is sooo simple to cure on a couple of weeks antibiotics there's an awful lot of research articles proving it is a far more complex bacteria than IDSA or our health authorities will acknowledge.

It is nearly two years since IDSA agreed to review their guidelines and still no result.

How many thousands of patients Worldwide have been infected in those two years and refused adequate treatment?

How many thousands of patients Worldwide have never been properly assessed to see if it could be Lyme Disease and continue to struggle with chronic illness when simple antibiotics could help their condition?

How lucky was I to have two very pioneering doctors who have successfully treated me.

Thursday, 18 March 2010

Ann Rheum Dis 1990
Research Article
A seasonal pattern in the onset of polymyalgia rheumatica.M A Cimmino,R Caporali,C M Montecucco,S Rovida,E Baratelli,M Broggini+ Author Affiliations
Department of Rheumatology, Genoa University, Italy.
Abstract
The seasonal distribution in the onset of polymyalgia rheumatica (PMR) was determined in 58 patients with the disease and compared with that in 44 patients affected by rheumatoid arthritis of elderly onset (EORA). Thirty six (62%) cases of PMR developed during May to August; by contrast, only 14 (31%) cases of EORA developed in the same months, this latter disease failing to show any seasonal clustering. The monthly distribution of PMR correlated with outside temperature and hours of sunshine. These data suggest that PMR might be triggered by such factors as actinic damage of superficial vessels or infective agents with a seasonal cycle. Finally, the summer clustering of PMR may be helpful in the differential diagnosis from EORA.

Hmm! May to August isn't that prime tick sequesting time?

What a thought provoking piece of research shame they didn't consider other epidemiological possibilities. My own illness which was diagnosed as Poly Myalgia Rheumatica turned out to be Lyme Disease. In fact reading about Lyme Disease and knowing the many problems with the vascular system I have to question the Giant Cell Arteritis? But then hey perhaps that is just me adding two and two and making five, what would I know about medicine.

I am just glad that my GP finally realised after 4 years of illness with Fibromyalgia, ME/CFS, arthritis and muscle weakness leading to a Poly Myalgia Rheumatica diagnosis that it was possibly Lyme Disease some months later a specialist confirmed her suspicions. I was treated on long term antibiotics in line with ILADS Guidelines and eventually recovered my health.

I wonder how many patients suffering with Poly Myalgia Rheumatica are properly assessed for Lyme disease especially with the testing being so unreliable.

Friday, 12 March 2010

People suffering from Alzheimer's and carers of Alzheimer's patients would find the research done by Judith Miklossy very interesting.http://www.miklossy.ch/401/index.html'The realization that pathogens can produce slowly progressive chronic diseases has resulted in a new concept of infectious diseases. A number of chronic diseases are caused by one or more infectious agents: e.g., stomach ulcer is caused by Helicobacter pylorii; chronic lung disease in newborns and chronic asthma in adults are caused by Mycoplasmas; and, Chlamydia pneumoniae and some other pathogens have been associated with atherosclerosis.It has been known from a century that chronic bacterial infections are frequently associated with amyloid deposition and that experimental models of inflammation and amyloidosis can be produced by injecting living or killed bacteria or their toxic products to animals.It has also been known from a century that chronic bacterial infection can cause dementia. Treponema pallidum, the causative agent of syphilis, causes slowly progressive dementia, cortical atrophy, chronic inflammation and amyloid deposition in the affected brain. Alzheimer’s disease (AD), the most frequent cause of dementia, is a form of amyloidosis. The pathological mechanisms driving the accumulation of amyloid remain unclear. Bacteria, including spirochetes, are powerful stimulators of inflammation and are amyloidogenic. They were suggested to be contributors in generating and sustaining chronic inflammation and amyloid deposition in Alzheimer’s disease. The concept is not new. Fischer, Alzheimer and their colleagues have discussed the possibility that microorganisms may play a role in senile plaque formation a century ago.The fact that pathogens may suppress, subvert or evade host defenses and establish chronic or latent infection has received little attention in the past'

I think Judith Miklossy's work is ground breaking and I had the privilege to here her present last year at Lyme Disease Action 2009 conference.Judith Miklossy has also done much research on Borrelia, Lyme disease. She like Alan MacDonald before her, found the DNA for Borrelia in the brain of Alzheimer's patients.

I see there is now further research in this field done by Rudolph E. Tanzi, Robert D. Moir et al

The Alzheimer's Disease-Associated Amyloid β-Protein Is an Antimicrobial PeptideThe amyloid β-protein (Aβ) is believed to be the key mediator of Alzheimer's disease (AD) pathology. Aβ is most often characterized as an incidental catabolic byproduct that lacks a normal physiological role. However, Aβ has been shown to be a specific ligand for a number of different receptors and other molecules, transported by complex trafficking pathways, modulated in response to a variety of environmental stressors, and able to induce pro-inflammatory activities.Here, we provide data supporting an in vivo function for Aβ as an antimicrobial peptide (AMP). Experiments used established in vitro assays to compare antimicrobial activities of Aβ and LL-37, an archetypical human AMP. Findings reveal that Aβ exerts antimicrobial activity against eight common and clinically relevant microorganisms with a potency equivalent to, and in some cases greater than, LL-37. Furthermore, we show that AD whole brain homogenates have significantly higher antimicrobial activity than aged matched non-AD samples and that AMP action correlates with tissue Aβ levels. Consistent with Aβ-mediated activity, the increased antimicrobial action was ablated by immunodepletion of AD brain homogenates with anti-Aβ antibodies.Our findings suggest Aβ is a hitherto unrecognized AMP that may normally function in the innate immune system. This finding stands in stark contrast to current models of Aβ-mediated pathology and has important implications for ongoing and future AD treatment strategies.

Judith Miklossy goes on to say'Highest priority should be given to this emerging field of research. It may have major implications for public health, treatment, and prevention as adequate anti-bacterial and anti-viral drugs are available. Treatment of a bacterial infection and associated viral infection may result in regression and, if started early, prevention of the disease. The impact on reducing health-care costs would be substantial.'

I look forward to hearing more research of similar ilk, rather than how many cups of coffee should or shouldn't be drunk!

Thursday, 11 March 2010

I suppose when a doctor finds themselves or their loved ones with Lyme Disease they must become the Medical Relative from Hell, there is so much that our doctors are not aware of with Lyme Disease and it's multitude of symptoms and misdiagnosis MS, Psychiatric, ME/CFS, Fibromyalgia, Arthritis other neurological illnesses just a few that come to mind all well documented in the Lyme Disease literature, if only doctors had the hours to look, which of course we as sick patients and carers do have the time to get informed, from sheer desperation and we are often very well informed.

Interestingly Lyme Disease awareness in the UK has a number of medics in the forefront, clearly their training has helped them to their or their family's diagnosis, but sadly they too have trouble with their doctors over Lyme Denial.

During my recovery I passed a few interesting research articles along to my GP, she always received them well, in fact even said 'you are educating me'!! What an open minded doctor and how lucky was I.

I doubt she has many patients who spend years with debilitating painful arthritis and muscle weakness, having difficulty standing and walking across a room who over time and long term antibiotics fully recover and cycle again.

So to read more about the Medical Relative from Hell there is a new quirky Lyme blog I came across recently on doc2doc blogs Secret diary of a Lyme Warrior, I look forward to reading more posts on this new blog.

Tuesday, 9 March 2010

Hi Everyone Feel real crap . Eyes started playing up again few days ago. By yesterday afternoon they were aching real bad and i noticed red rash ( PERFECT CIRCLE, BRIGHT RED THEN FADING THEN BRIGHT RED AGAIN, NOT ITCHY OR PAINFUL ABOUT 3 -4 INCHES DIAMETER ) on inner arm.i had it before about 18mths ago was getting palpitations, difficulty swallowing and numbness spreading from neck into jaw. GP thought it might be thyroid ( I've had half of it removed ) sent me to hospital. I had this weird rash a red circle that had got bigger on inside of my arm but he wasn't interested didn't even acknowledge me when i mentioned it, So when he had done patronising me and made me feel 10 inches tall telling me there was nothing wrong that i was hyper aware of my throat i went on my way and eventually began to feel better until November 09.In Nov 09, double vision, balance problems etc etc and strange circle rash in exact same place on arm. By time i saw Neuro rash had faded and i didn't think anything of it anyway so i never mentioned it.Few days ago blurry vision, aching eyes progressing to stabbing pains in side of head numbness on side of face and weird circle rash came back in exact same place again ( which this time i did think this is odd ). By this morning felt terrible and circle was bigger so went to A& E. Doctor there gave me examination, did a blood test and said that i have some sort of infection as my white blood cell count was raised. He said with that and the circle rash he had better test me for Lyme Disease ( he looked on my records, I've not been tested ) He also said he was surprised that i hadn't had a lumbar puncture. Anyway results will be back in 3 days. Has anyone on here had any strange rashes when they've been having symptoms.Lisa xx

The above came up on my google Alerts from a UK MS forum and sounds a strong possibility for Lyme Disease, several of the comments also said they had had similar experiences with rashes and bites but showed a clear lack of awareness on that forum over Lyme Disease so I had to leave a reply. It is so difficult to know how much to include and how much to leave out and let people make their own enquiries at their own speed. We are all so indoctrinated into the idea that our doctors are infallible and yet the more research you do about any illness the more you realise how much there still is to know about illnesses as Dr Jemsek said out of the top 20 illnesses we only know the cause of 2 HIV and stomach ulcers.

So this is what I wrote and something every MS patient should be aware of.

Hi Your comment came up on my Google Alerts and because of the huge controversy over diagnosis and treatment of Lyme disease you really need to do your own research and not just depend on your consultants as currently they follow HPA guidelines which follow IDSA guidelines.

The IDSA Guidelines are currently under review following legal action against the authors of the 2006 guidelines details of presentations can be found on IDSA website but also on www.ilads.orgReseach shows that blood tests can miss up to 50% of cases, many doctors following ILADS believe it should be a clinical diagnosis. Indeed the CDC say as much especially if you have EM( bulls eye rashes) which can re occur, they are diagnostic of Lyme and patients should be treated on antibiotics with this rash with no need for confirmatory tests.

Many MS doctors would expect to perform a spinal tap for Lyme this is brilliant if it is positive but in reality it is considered a 7% chance of positive test with someone with Lyme Disease.

As to your symptoms all can be caused by Lyme Disease, eye problems are common. Neurological Lyme Disease is well recognised amongst Lyme literate doctors sadly you are unlikely to find one on the NHS because they follow HPA/IDSA discredited Guidelines however consultants and doctors are not stupid and if they took the time to read the presentations to IDSA especially Stephen Phillips where he presents 25 studies of seronegativity and persistent infection, Phillips highlights on 18 occasions where IDSA 2006 authors were actually involved in that research confirming seronegativity and persistent infection yet failed to include it in their Guidelines. At the end of the presentations to review panel the chairwoman asked Steere to comment, what was his answer OPINION, Opinion is what is driving these guidelines and leaving thousands of patients the world over without diagnosis and treatment that can help. Other useful details for consultants and doctors to read would be ILADS or Burrascano Guidelines both found on ILADS website.

I was lucky with my GP she took the time to read these alternative guidelines as some other doctors have, they realised that the jury is very much out over correct treatment protocols for Lyme Disease. There is no evidence to stop taking antibiotics whilst symptoms continue, again it is based on opinion.

My symptoms which were mainly Arthritis and muscle weakness but some peripheral neuropathies and swallowing problems, continued to improve on antibiotics but deteriorated when they were stopped. Not rocket science when faced with debilitating symptoms to want to continue on what is helping and with supporting guidelines from Burrascano I continued for many months on antibiotics. Now I am 100% I have no pain no disability and am on no medication although I had been retired early on ill health grounds from the Civil Service. For 3 1/2 years I had not been able to walk up or down stairs properly I can cycle now.

Lesions for MS and Lyme are not distinguishable from each other. Lorraine Johnson's presentation to IDSA review found on ILADS website at 2.20 along shows her spect scans before and after Lyme Disease treatment, she was diagnosed with MS and bedridden, now you can see she if recovered and fully functioning.There are many such cases available and I am in touch with many with Neurological symptoms although not all with MS diagnosis through chat line Eurolyme google for a link and join just to ask a few more in depth questions you can soon join out if you decide this is not relevant to you.

UK charity Lyme Disease Action www.lymediseaseaction.org.uk has done much to present good science about Lyme Disease, the many symptoms that can be mis diagnosed as so many other illnesses which are often treated with drugs that mask the symptoms but don't deal with the cause, in this case a bacterial infection often associated with many co infections which aren't even tested for in the UK.

Another point is that Blood tests were developed on one species of Borrelia and in UK/Europe there are 4 known species which can present differently. In USA there are over 300 known strains of Borrelia some mild causing rash only symptoms whilst others are more aggressive causing very debilitating symptoms clearly leaving huge questions over efficacy of the blood tests.

Why such huge controversy well the recent documentary does help to explain what has happened you can see an extract on http://www.underourskin.com/ but there are many other extracts worth watching links on their website.

Recently I started a blog giving links into many useful articles, charities and research see http://lookingatlyme.blogspot.com/These links are something everyone with MS diagnosis should read carefully as things stand currently it is unlikely that they have properly been assessed to see if they could have Lyme Disease which is treatable, relying on blood test results is not good enough, that is even if a blood test has even been done for Lyme Disease. That is not to say that every MS case is Lyme Disease far from it just how many are properly assessed to rule it out.

Long term antibiotics are frowned upon yet Borrelia organism is as complex as TB and Leprosy, they would be treated on long term antibiotics. Syphillis which is another spyrochetal infection similar but less complex than Borrelia, you would not treat that with just a few weeks antibiotics.

Many treatments for MS are far more invasive than long term antibiotics.

There is a lot of reading you need to do before next speaking to your doctors very best wishes to you.

PS. the smallest tick is the size of a poppy seed so can attach and we are not always aware of it, about 40% of people are unaware of a bulls eye rash which doesn't usually itch and can present in many different forms so not always easy to diagnose, for some patients they can remain without symptoms for years after the bite is long forgotten and then something can trigger it such as a compromised immune system from stress or illness.

Most doctors do not recognise EM rashes for what they are because they are taught Lyme Disease is rare in UK albeit there are cases now throughout UK and many areas are known to be endemic according to HPA New Forest, Scotland, Dorset, Yorkshire, Sussex, Thetford Forest and New Forest to name just a few from memory.

Sunday, 7 March 2010

If I'd known what I'd known a year ago - I should have just walked out the door! It's certainly been an exciting year – and it's all Marie's fault! (Marie Kroun).Bill's (Bill Harvey) been staying with me all week. My presentation of symptoms wasn't quite as traumatic as his. I was in the bath. I'd had 6 pints of Tetley's. I was a medical student staying in a really grotty flat. I got parathesiae in my feet and muscle twitches.But that's not why I got into CFS. I got into that because patients of mine went to see psychiatrists and were told they were hyperventilating – despite the fact that their lives were totally wrecked. I thought there must be a bit more to this illness than hyperventilation.Eventually, I turned up here last year because I'd already started to think about whether ME and other disorders were bacterial. I talked to a few people about this and started to do some work with Milton Wainwright and got there eventually.My experience is exclusively in ME. I still am, though I don't do very much for them now because I have such a different view of the illness now that they think I'm even madder than they thought I was. Because when you have to write articles and answer doctor's questions and not mention the word borreliosis, it's really difficult! So I've got to tell black lies all the time. For example, when they say, "Why do you get this in ME?" I can't say, "It's obvious. It's cause you've got vasculitis." But I'm still one of their medical advisers.

Thursday, 4 March 2010

For those of you who suffer like I did with ME/CFS, Fibromyalgia, Arthritis and muscle weakness, Poly Myalgia Rheumatica and Lyme Disease, any of those illnesses and you live in the following locality in Ireland you may like to know that Tick Talk Ireland are putting on a show of Under Our Skin the following was recently posted on Eurolyme.

Hello all - Tick Talk Ireland have now come out of hibernation and are putting on another Under Our Skin event - see details below:Tick Talk Ireland will present, free for public viewing, the USA produced documentary "Under Our Skin," Thursday, April 15th at 7 to 9 pm at the Diseart Centre in Dingle, Co. Kerry, Ireland."Under Our Skin" deals with the risks, diagnoses, and treatment of Lyme disease. The documentary, which is of the highest standard, was short-listed for the 2010 Oscar awards. As it deals with some stressful issues, this film is recommended for adult viewing only.This venue is held in collaboration with the Dingle Hill Walking Group.To RSVP go to:http://www.facebook .com/event. php?eid=33828702 6212&ref= mfor contact Janet at ticktalkireland@ yahoo.co. uk

Tuesday, 2 March 2010

Those in Europe who suffer with Lyme disease can pass this information on to their doctors, lets hope many of our doctors attend this conference in London, which is the first time ILADS has held a conference over this side of the pond.

It is not open for patients to attend but lets hope the presentations made are eventually available on DVD, as many of the ILADS conferences are.

Basic Lyme: An Introduction to Testing and Treatment of Tick Borne Disease For UK Medical Professionals

In conjunction with ILADS, ILADS' Member Sarah Chissell, MD is organizing a one day conference.

The goal will be to educate the medical professional on the proper diagnosis and treatment of Lyme disease. It is geared towards medical professionals who have minimal familiarity with the subject matter.When: Saturday 12 June 2010.Where: the Royal College of Obstetricians and Gynaecologists, London, England

For Whom: European doctors and healthcare professionals. American physicians welcome as well. Limited seating.-------------------------------------------------------------I have added links to information about each of the above presenters but they are only ones I found as a lay person who is taking an interest in the controversy over this illness Lyme Disease and it's many complex presentations, there are many more links into a wealth of information for those sufficiently interested to look.

Lord Astor of Hever (Con) My Lords, I want to speak briefly on the specific health issue of Lyme disease, which is a rapidly ...

Disclaimer

Nothing I say can be taken as medical advice you must do your own research and discuss with your doctors.

Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.